Rugby’s MP Mark Pawsey met with leading specialists and patients at University Hospital Coventry and Warwickshire (UHCW) to discuss improving access to treatment of a rare hereditary disorder.
Alpha-1 Antitrypsin Deficiency (AATD) is caused by an abnormality in one of the body’s protective proteins and affects a patient’s lungs and liver. This can lead to a particularly severe form of emphysema, as well as cirrhosis of the liver.
Mark met with Dr David Parr and Dr Beatriz Lara, who has joined the team at UHCW from Barcelona, where she was an international chest expert.
The Midlands has become a home of expertise for treatment of AATD, with a new clinic established at University Hospital by Dr Parr in 2015. Patients travel from across the country to be seen by Dr Parr and his colleagues for the specialist treatment this condition can require.
Mark commented:
“It was a good opportunity to meet with Dr Parr and patients who have Alpha-1 Antitrypsin Deficiency and learn what progress has been made on treating this condition.”
Mark continued:
“I first had my attention drawn to Alpha-1 Antitrypsin Deficiency by one of my constituent’s and I have taken an interest in the condition, including arranging a meeting with Dr Parr and the Health Secretary, Jeremy Hunt, during the last Parliament to raise his awareness of the Alpha-1 and how it can be treated.”
Mark concluded:
“The biggest challenges in combatting Alpha-1 are ensuring correct diagnosis and providing the right treatment. Often, it is incorrectly diagnosed as asthma which leads to a delay in patients receiving treatment, which can have devastating consequences. I was pleased to learn that improvements have been made in testing for Alpha-1 and I hope that we can continue to build on this progress.”
Dr David Parr, Consultant Respiratory Physician at UHCW, added:
“Mark is already known as a champion of the cause for patients with AATD and we’re very grateful that he took time to visit us to learn more about patients’ experiences and our rapidly developing service. At the meeting, we told Mark how our team is made up of specialists from various departments who can give advice and treatment to both adults and children. We also discussed how important it is that patients can choose whether to join research studies at UHCW to look at new forms of treatment.”